Hey you all ! I am a foremost a _MOM_ poster. This is the start of my post but not sure what to do or ask. Please help me and provide inputs on how to navigate with this unknown area-abyss of information. My story below.
The start...My son did not get a seizure but somehow he got a cramp/crunth like feeling on the right side of his body which he could feel coming on and actually control it while it is coming.
He had this episode while he was driving and he could still control it and while at work he was able to adjust. It would send a signal like that he would start to cramp and a settle like cramp just on that side of his body but then it would start to settle down. Fast forward he started to report that side of his body had somewhat a delay on coordination but he said he would still be able to signal the action. My son then called me and texted to tell me this is starting to get serious! This was happening during his college exams so I thought his anxiety was causing this issue.
However- this event happened again just while at work pushing a cart and doing a simple task. I decided to take action and get him into a Neuro which he was not able to diagnose him. But sit and wait. He assigned us to an MS Guru so we started this path of discovery.
Hospital Journey:
He has had multiple MRI- blood work- the lumbar showed negative. The MS doctor decided to just diagnosed him with MS but we are still wondering if this the correct diagnosis. If you cannot see it on the lumbar then what? He has like MS symptons as I have described. Studies show that males would start to show sign in their 20s- he just turned 22. He is not a smoker, drinker, drug user- vaper, no tattoes. As a mother I am lost, I wonder if I did something wrong but I was assured it is not something I had done while he was in the womb. Then I asked if this was genetic issue. I was told yes and no. If someone in the family has the issue then it becomes a high risk. I left the entire conversation with more questions than answers. I also started to contact on his father side because I am not close to DNA. It is not about pointing but on how I can make sense out of this and provide a good outcome for the path forward for my only bioligical son- the love of my life.
The MS doctor started to proceed to put him on an agressive steroids - he is responding well and is reporting the right side of his body is returning back to normal for now.
My ask: how do you know you have MS? When a doctor cannot depict the root cause? The symptons may be different?
The drugs prescribed on any of them: On males will that cause issues with their fertibility? UTI?
Key approach is to avoid further issues to the brain frontal area and or further lesions to the brain
Health Insurance: What have you experience in terms of costs? Long term as people start to age- he is starting like at 20 but what have folks experience with the health insurance?
I look forward to a making friend here.
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Haku949
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What did the MRI's show? The lumbar puncture isn't a definitive test, just part of the whole. He shouldn't have been diagnosed with MS unless the MRI's show both old and new lesions.
The high dose steroids are a quick fix for a lot of things, so for now I'd say to just enjoy the fact that he's improving. Have him monitor his symptoms, paying particular attention to what he was doing during the 24 hours before they started. He may need to adapt some of his activities.
Learn as much as you can about MS from legitimate sites operated by MS professionals. See how that information matches up with what your son's experiencing. Getting an accurate diagnosis frequently takes several years and multiple doctors. Obviously, something's wrong, but your post doesn't go into enough detail for me to necessarily agree with the doctor's diagnosis.
There is also nothing that you did or didn't do to cause this. It's just one of those things that happens sometimes.
NorasMom on the MRI had an old lesion then after 6 months a new one did show up on the MRI. But the Dr. had issues truly seeing if it was a new lesion or a vein. Blood work showed no other indicators except he is low on vitamin D. I have noticed the first episode did happen during exams and he does not handle stress well. I somehow feel something is not right but then again for now I am relieved he is feeling better. Any sides effects from using these sort of fusion steriods?
There are potential side effects to every drug, but trust me when I say you do NOT want to skip the steroids unless they would cause some potentially-fatal reaction (which I've never heard of). The steroids won't stop the current damage or prevent more in the future, but they will reduce the current issues to a new normal.
A diagnosis of MS is a stressful and difficult time for people - both those who are told that they have it, and members of the family. Your post reads as if English is not your first language, and there are some slightly confusing parts in what you have written. It also appears that what the doctors have told you is confusing to you, for example, your question of "If you cannot see it on the lumbar then what?" - this is unclear as to what you are actually asking members of this forum as the question does not make sense. The same for "how do you know you have MS? When a doctor cannot depict the root cause?".
Also, to give you the correct information and reassure you that there is nothing you have done which could have caused your son to get MS - MS is not an inherited genetic condition, but if someone in a family has MS there is a slightly increased risk that other members of the same family could get diagnosed with MS at some time, but it is not a high risk, just a slightly increased risk - this is known as a "genetic predisposition". However, for many people diagnosed with MS there is absolutely no history of anyone else their family who has ever had MS.
In relation to increasing your knowledge about MS, and helping you to understand what the doctors might be telling you, I strongly encourage you to go through information available on websites run by reputable MS organisations. Doing this will give you factual and well explained information about MS and will help you understand the MS diagnosis processes and tests, what treatments are available, and how MS is different for different people, and will probably answer a whole heap of questions you haven't even thought of yet.
Here's a few good and reliable websites to get you started. Note that they are in three different countries, so some information (e.g. re drugs and approvals for drugs) may not be the same as wherever you live, but the basic facts about MS will be the same, maybe just presented a little differently - but all of these websites are full of solid information that will help you (and your son).
Answers to your question about health insurance will depend on what country you live in and your son's personal circumstances in relation to health insurance.
Calling someone a "grammar nazi" and "rude" is uncalled for. Complaining about being judged is also inappropriate. Be nice if you want these good people to help you.
Facts are facts. It is inappropiate starting a conversation with some unknown person on the web asking for help. Accusing someone of ESL and complaining about grammar, lack net etiquette- whatever message that came from that person I will simply ignore. It has nothing to do with the topic itself. I disagree with your comment and honestly you are starting an arguement that is useless to this forumn. If you cannot stick to the topic itself please stay out of my lane. You are just adding to the fuel that is something between me and the "Nazi" grammar.
I don't know what communication challenges you are dealing with, and I certainly don't want to be cruel or insulting. Having a son recently diagnosed with MS is a hard thing to deal with and I'm sorry you are going through this. That said, attacking others and calling someone a Nazi is not going to help anyone.
CatsandCars Read before replying. Follow the email thread. I have the right to stand up for myself. I will not continue to be insulted by this person. She is insane following me in this thread. Something is oddly wrong with her mental state. Others have alerted me and asked me to ignore her and the other Grammar Nazi. Treat others as you would treat yourself. Anyways if it bothers you that is your right but I will not get bullied !
I reported you to the site admin- you like to insult people I will not tolerate like others have. There people here who have directly communicate of who you are. Disgusting that you do not own what you said or have done. Why are you part of a support board? What is your purpose? You are out of control- I feel bad for Betty !
First I want to say I'm so sorry you and your son are going through this. 🫂I'm new to all this myself. Welcome to the community. And, nothing you did caused this. Like NorasMom said, it's just one of those things that happen.
I think it depends on the doctor how they diagnose. I was diagnosed on tests in office, brain MRI, and Lumbar Puncture. But this was a diagnosis years in the making. The flare I was in lasted months. I was given steroid to stop my flare, and it has works pretty well on some things, others, we'll have to wait and see how things respond (I only got the steroids just last week, just diagnosed the beginning of this month). I won't get my spine MRI till this Friday. The steroids work to fix the flare, but not the underlying reason for the flare.
Stay on reputable sites, because there is a LOT of misinformation out there. And a lot of negative people. I'm not as knowledgeable as the people who have had it longer, but if you'd like someone to talk to, feel free to message me, I can send you some of the links of websites I've been on to research and such if you like.
MSFlea thanks for the lovely reply. No kidding my first post I already judged. So the steroids did help with the flares - good to know you are making progress. It took him a week after to start feeling better. His right side of his jaw is somewhat numb and the same for his right arm. Do you get a feeling when you are about to get the flare? We are seeing the doctor this coming Tuesday. Lets see if he recommends on-going steriods. I will ping you directly. Hugs back !
This is an awesome community, I'm glad you found it! I'm sorry you feel judged by something... I've only met positive people on this particular site so far. I've looked at several other communities and posted to one or two... but met a lot of really negative people on other sites. This group is so positive and helpful! The people on this site have a lot of understanding and helpful insights. I hope you feel as welcomed as I have🧡
In MS, corticosteroids are used to treat acute exacerbations. They are used for a very short period of time. They are very rarely given "on-going" like they are in some other autoimmune disease.
Becareful of the sites you go on MSFlea they can take you down a rabbit hole🫣 I'm so glad to hear that you are feeling better! How are you feeling on the 'roids? 🤗💕🌠
You are right about the rabbit holes! I'm learning which sites are good and which are not, plus someone recommended Aaron Boster on Youtube, and he is great! I'm doing better! I'm hoping for more improvement, but I don't know how long the steroids last, how long they take to work... My neuro didn't say. But the headaches are mostly gone and that is such a relief! Trying to slowly see if this is my new normal and start trying to do more as I can!
You are so right and I appreciate your words of kindness. There is missing information but please understand there is a vast amount of information about multiple sclerosis that neurologist just don’t know. It’s not because they’re bad doctors it’s because the brain is so complex to be just can’t tell. They really is no answer to where does MS come from only speculation. The way I look at it is it happened and I have to deal with it and have the best quality of life I can.. I just do the best with what I’ve got. God bless you!
Perhaps. However, there has been an enormous amount of MS research done in the past 35 years, and great inroads have been made as to the multiple contributing factors resulting in MS. But attempting to find the cause for a particular person is impossible at this time. You are so right that if you are diagnosed with MS you have to accept it and learn to deal with it to the best of your ability.
Welcome! Family history is irrelevant and will not change anything. It sounds like there must have been something on the scans that led to his diagnosis. Glad to hear the steroids are helping him! 🎉
I was diagnosed with MS because of my MD's physical exam results and the MRI results. I did not have an LP, and have never had one. I had the disease since my 20's and wish I had been properly treated then. Most of the medications do not cause infertility or UTI's. I had fertility issues before the meds, and have had 2 healthy kiddos since starting MS treatments.
It depends on the insurance and the medication or service. I pay for my scans, and usually the medication is covered, with the drug company paying for the deductible.
Hi Haku949 welcome! So sorry to hear about your son. This is a lot to take in, we all get that! We have all been there! 🤗 There wasn't anything you did to cause this! It just... is. It's a roller-coaster of ups and downs. And alot of unknowns. And alot of letting go.
Jesmcd2 Thank you for the support and yes it does feel like a roller-coaster. I will just accept this and proceed to educate myself as much as possible.
I know how scary it can be! We have all been there... you can ask what ever you want and we can answer the best we can! As far as 5he steroids go... my experience along time ago was... hunger but you don't feel full, energy, and temper out of nowhere.
my initial mri was inconclusive and my spinal tap was negative. But my neuro diagnosed me based on symptoms ten months later. I know my experience isn’t typical.
When I could finally afford a second mri ten years later, it was an obvious case of MS.
I’m glad I was able to start meds early. I believe it made all the difference.
Document his symptoms and check in regularly with his doctor.
StacyHayward This is somewhat what he was saying- the MRI was showing an old lesion but not clear. But to be on the conservative side he said he is making the diagnosis. Agree on documenting the symptons and the check-in regulary. Thank you for your advise, Worried Mum
Your son 22 years old. He is an adult, not an 8 year old child. He has MS; you do not. You need to let him grow up and be a man who can manage his own life going forward with a chronic illness. Your job is to be his support system. You can help him but but you must not try to manage his MS; that is his job. Right now he needs to understand everything that is going on with his diagnosis. He needs to be reading the references that others here have given you. He needs to keep track of his symptoms and communicate with his doctor. You need to help him learn to be independent and take care of himself.
as I have said before to this group. You will come across people that can be angry, angry depressed and frustrated however, 99% are supportive, informative or downright funny. Extract the good and cast out the bad and you’ll be fine.
But what if it is the OP that is hostile, not those who are responding to her? The people responding to the OP have been amazingly sympathetic and supportive.
we can only control what we can control. The rest is just noise and as for me I’m deaf when it comes to that noise! God bless you, and I will pray for your situation as I do everyone with this awful disease or those dealing with someone that have the disease! Please have a great day!
BettysMom You are entitled to your opinion however to state things without the facts without understand the entire segmentation of things. Then you are wasting my time and causing other issues. What makes you think he is not doing his own research? I do not need to provide you with every detail- I owe you nothing and neither do you. I don't think I would like for you to keep communicating with me as I feel you like to create flare ups, divise and judgemental.
If you look inward, you will find that it is you who is divisive and "flaring up." Anger and vitriol have no place on this forum. The people here are kind, sympathetic, and helpful. Please be nice.
😜 Oh, boy. Actually, it is not illegal for a person to claim to be a doctor in a casual setting like this; it is simply a lie. But I am indeed a physician, an M.D. I have no idea why you would doubt that except that you are jealous and resentful. Besides being a doctor, I am a retired United States Air Force officer.
BettysMom you love attention and I do understand this very well. That said here is an Olive branch. Thank you for exposing yourself. We are all looking at your posts across. I honestly wish you tons of luck on your mental health and any other issues you may have. I truly wish you well and hope for your speedy recovery from whatever you are suffering from. We are here to support you no matter how rude you are or the out of touch posts, you get lost on the topic quickly. Sorry for that. If you're truly a retired Air Force officer- thank you for your dedication and making this country great with your hard work and sacrifice. My family comes from the Air Force as well so I would not joke about something like. Truly respect that. I hope you can have peace with yourself and be happy. Stay well and be safe!
BettysMom you are hilarious. Lie in it? Correct your English. It is lay not lie but I understand to claim to be an MD so it might of slipped. What sort of drugs are you on?
Now this is really, really funny. You have just illustrated your poor grasp of good grammar. The correct word is "lie" in this case. Do a little research on the internet and you will be embarrassed to find that I am correct.
I can’t understand why he has not had a brain mri ! While the symptoms he’s having are MS symptoms what other symptoms does he have? There’s a lot of missing information here so it’s hard to even give an opinion! Is there a scheduled mri to check for brain lesions ? There are a few symptoms we most all have there are many other some have and some don’t!
According to the OP "He has had multiple MRI- blood work- the lumbar showed negative". However, no info has been given on which bits of him were scanned, but it is a reasonable assumption to make that a brain MRI would have been one of those multiple MRIs - otherwise MS could not have even been considered by the neuro as a possible diagnosis.
I just know that if he has M S. He should have been given an MRI to check for lesions. Then promptly placed on a disease modifying therapy, which most everybody takes to slow progression. If he has MS and does not receive a DMT, there is a possibility of a PML. That’s something that you don’t want at all cost!
What is PML? 3 MRIs- sorry for the babbling during the posting One old lesion and then another one showed up but he is not sure if it is a lesion but could be a vein.
PML is usually caused by a persons JVC level and unfortunately people generally don’t live through a year after diagnosis. It also caused when a person. Neglect taking their DMT, my neural will not let me go two months without Tabri and in the event that I do, she says, go straight to the emergency room and call her so that I can immediately be placed on steroids to prevent a PML. Everyone is either positive or negative for the JC virus on the JC stands for John Cunningham. You might want to research some of this. Lot of it has to do with auto immune. I would recommend aggressively looking for an answer as soon as possible. I have two twin sisters who both have MS they are identical, twins one was diagnosed in the Neuro said the other had a 30% chance of getting it. Well she got it. I had a 5% chance the reason I am impressed is upon you is because I went for approximately 20 years with multiple sclerosis, and was too hardheaded to go get an MRI for babbling I’m just want to see things work out OK and I don’t mean to fry you with anything I’m said . Dealing with neurologist is tough because they are hesitant to tell you how many lesions you have. I’m pretty much had to point blank say how long have you been doing this Dr? After the answer I said, what does your gut say? Then I was told I had 75 lesions that it grouped together to become three black holes. Had I not asked and pressed I would not know to this day. Will be praying!
75 lesions ! You are truly a warrior !! This is the part where I question today's doctor- the quality has not been so great. As I tell folks you have to be your own advocate. It is great we have the technologies but in all we also need to use the human aspects of it too. As I sat next to him looking at the results and asked the proper questions he was not able to fully explain things. I come from a technical background and very familiar with various type of health applications. After this coming Tuesday if I don't feel he is providing a good assessment then I will let my son determine if he wants to continue with this doc tor. The good news so far the steriods is helping him. Thank you for your time Mark !
I was hardheaded. Only God knows, but we think I could’ve had MS 20 years before my diagnosis. Where most people get depressed when they get their diagnosis, I felt a sense of relief. I had been belittled by family, friends and even church members for years losing jobs. I was told I was a piece of crowd and I started to believe it. Since my diagnosis I’m changed my life 180° and I’m happier than I’ve ever been. I will be skydiving in March while I’m still able so please keep your fingers crossed that my shoot opens.L O L.
Mark1499 A sense of relief knowing what you are dealing with is great ! The unknowns causes anxiety for some. That totally stinks family tends to do that and it saddens me to hear the church people did not support you either. I will keep my fingers crossed for you. Enjoy life and just know you are not alone, Best, Worried Mum
Thank you! Sounds like you are a sister in Christ. An Elder sat down opened the Bible and turned to a scripture that makes reference to, a man that doesn’t work doesn’t eat. I was a professional successful business manager that worked my way through Huntington college only to wind up carrying a 40 lb back pack sprayer in 98* heat. The good news is after my diagnosis the only person that came to me and apologized was my son. I love my boy! I changed Churches rededicated my life to Christ Easter of 2019. I’m happier than I’ve ever been! Sorry for venting!
This young man did receive an MRI of the brain. The OP was simply not clear on the information she shared. And, of course, the diagnosis of MS cannot be based solely on MRIs. Whether a patient receives a DMT "promptly" or a few months down the road will make no difference in the outcome.
We must agree to disagree. I was diagnosed strictly from an mri and a DMT was not a choice for me. I am blessed in that I have the most renowned MS neurologist in the world. It seems every visit I meet someone from Europe,Canada and all over the US. I’m sure you’re doing what is best and I will pray for success!
There's nothing to disagree about, Mark. Your neurologist did NOT base the diagnosis strictly on an MRI. He had your physical examination and your medical, neurological, and family history to use. In the past, that was often all physicians had to go on when making a diagnosis of MS.
I guess we’re splitting hairs because I was at the point where all it took was an MRI for my diagnosis so I understand your point and then is well taken.
All it took was an MRI after your doctor or doctors had done physical examinations and taken a lot of history from you. PE and history are key to making a diagnosis. Imaging and lab test just confirm what the doctors are suspecting and expecting. I am an M.D., so I know how the diagnostic process works very well.
I think the fact that my twin sisters already had it having symptoms and mri said, these lesions are from MS. Would never question your medical credentials just explaining my journey was different.
Yes, your journey is different. But your doctor did not make the diagnosis by looking at an MRI without knowing a lot about you. He looked at the MRI knowing that you had two sisters with MS and a colorful history of MS symptoms.
Mark1499 - Re your comment "If he has MS and does not receive a DMT, there is a possibility of a PML" - this is not correct - an increased risk of PML comes from the mode of action of some of the DMTs used to treat MS. In other words - the MS comes first, and then the DMT comes second, and then if someone is really unlucky PML might come along to join the party at some unknown date in the future. And don't forget that not all DMTs increase PML risks - Tysabri is the main one, but there have been some patients on Fingolimod where PML has occurred (more so if a patient had previously been on Tysabri), and a couple of others used in MS have had some very rare cases of PML occur.
"Immunosuppressive medications that have been associated with PML include cyclophosphamide, corticosteroids, mycophenolate mofetil and monoclonal antibodies including natalizumab (Tysabri), rituximab (Mabthera) and alemtuzumab (MabCampath)"
I see you’re the expert so I won’t argue your point. I know that taking Tysabri I have to check my JC levels every 6 months. What no one can explain to me is how I was jc positive before Tysabri. After getting up to a 1.24 I tested negative 2 times. Now .94. Since you’re the medical expert please tell me why I would become negative 2 times after testing positive before starting Tysabri!
Can you please explain your reply because cause I’m not sure I understand. I’m not the best at navigating this website so I’m at a loss to what your reply was referring to.
Mark, I'm sorry I was unclear. I meant to comment on your question as to why the son has not had a brain MRI by saying that I could not tell from the original post whether the original poster's son has had a brain MRI or not.
I take a DMT called Tysabri which is infused in me monthly. It’s $60,000 a dose health insurance covers 32.500 patient assistance picks up the rest. I am on 18 prescription medication’s, and my co-pay alone for them all is close to $300 a month. I think the main thing you need to understand is that it is expensive but extremely necessary for him to get the proper medication, especially a DMT to slow progression and have quality of life !
Mark1499 holy canoli - no kidding that is alot of pills. I am quickly realising this will get expensive. In fact I had to contact our insurance this morning making a point it is the doctor asking for these MRIs. An hour later I was told he can only have some MRIs per year. Alas this is just all very heavy to deal with but I put on my battle gear on. Whatever it takes. I do agree slowing down the progression it key to the rest of his life and quality.
He won't need a lot of MRI's. Generally, once they get the base reading, they might request a new one every 3-6 months until he stabilizes, then once a year, then longer than that if he's not having exacerbations. Once your son adapts to his "new normal", he'll have an idea of when he needs another MRI or steroids.
NorasMom noted. I truly believe this has been caught early enough for him to be able adapt. Today I spoke with a co-worker that has MS and I did not even know- as I started to shared I may be taking time off here and there to go to the doctor with him. She had it since she was 18 and said she is remission. I guess there are mild cases.
I was diagnosed 19 years ago. I presented with just a numb spot on my face. The first test was an MRI. The were several old lesions most old but a few w!ere been & active. That led to several tests & they all indicated MS. But that was me. Some people only present with a lesion on their brain & nothing in the lumbar test. If an MS specialist diagnosed him with MS then your son probably has MS. A specialist knows all the markers for MS. MS can be very hard to diagnose as there are several other diseases that mimic MS. It sounds like his Dr took the time needed to diagnose. As for treatment... There are a of different treatments & the Dr will suggest the best path to take & the patient makes the final decision. Steroids aren't the cure all but they do do help to calm or stop activity for a time. All of the medications have side effects. All medications can act differently on different people, as we are all different people. I've tried several medications over the years, some worked for me & some didn't. Having MS can be a tough road at times, especially at first. Educate yourself ad much as possible. Take it one day at a time. Remind your son that stress can & will make things worse. Acceptance that he has MS will make it easier for him to adjust to a little different lifestyle that will inevitably need to happen. Life isn't over just a little different.
As foe insurance, you will need to check with them. There are so many different insurances out there to even begin to tell you what they do.
I hope you will find the answers to your questions in time a I hope for the best for your son.
Abyss, yep. Btw, majority of the time people on here are helpful and kind. Don’t let the grammatical corrections get to you. Usually it’s a retired medical provider or teacher. I’m sure every post of mine has tons of them and…it really doesn’t matter because that’s not why we are here.
You came to this site and laid it all out as best as you could. You did what a caring person does, looking for answers and/or potential clues. Your son is blessed to have a Mother that is involved in his journey. My Mother still guides me and I greatly appreciate her assistance.
My diagnosis was quick in 1995. Had an epidural procedure done for pain from car accident. Next morning I woke up with slurred speech. Odd, but felt ok otherwise. When I was in my office at work, a large black circle completely obstructed my center of vision. Next my left side decided not to work. Everyone thought it was a stroke. I felt fine. Taken to doctor and the first test were MRI’s followed by an exam with eye doctor. After exam he said “Have they told you that you have MS?”. No. I was instructed to pick up MRI and bring it to Neuro. I decided to look at Findings Summary, alone, prior to visit. Egad! It read: In this age group usually demyelinating disease multiple sclerosis. Neuro said my findings were, to him, “As clear as mud.” Diagnosed me with relapsing/remitting ms, started on beteseron and told to apply for disability. I was director of respiratory therapy at facility for severely mentally and physically challenged children. I loved my job and worked hard to get to where I was. Just erased away. Received disability on 2nd attempt after hiring attorney. Both of my daughters received funds too. Relived all three of us would be insured.
As far as feeling it coming on, I don’t experience that. I do know that if I overdo or get too stressed it slowly starts to overtake me and then the flare can last for weeks. I’ve learned how to manage it better, it’s taken years.
It can be a very expensive disease to have, especially the meds. Good news is we have each other here for kind words (usually kind) of encouragement and advice along the way. You have been given some great replies with great places to research. I document everything and get copies of all appointment summaries, labs, MRIs, testing, etc.. I started recording my appointments because I couldn’t remember everything. I’ll probably get comments for that.
Hoping today is a good day and please keep us updated. Keeping you in my prayers and don’t forget to take deep cleansing breaths. 🫧✌🏻🌎
Wtfisup In all honesty I do see her point however the delivery was off. Her strengths are not in the communication department. Some people are just angry by nature. It is what it is. Thank you for sharing your story, you certaintly will be the victor in all of this. I will start a recording keeping for all appoinments and in parallel have him also partake in the process as well. Please keep me informed on your health as well, I am here to support folks too. Enjoy your day and thank you again for your encourangement, kindness, time. Toodles, Worried Mum
Actually, as a medical provider I can almost always correctly interpret the comments and questions made by members of this group and I have no need to critique or question what they have said. But I must admit that this OP's narrative is frequently obtuse, especially to people who are not adept at interpreting laymen's vernacular in a medical setting.
M heart goes out to you for the situation you are in with your son. I, too, have an only son and he is the love of my life so I feel your pain.
I highly encourage pursuing all possible medical avenues to get a correct diagnosis. I follow Dave Bexfield of “Active MS’ers”, an email newsletter originally started to provide information for people with MS who want to travel and stay fit.
He’s an excellent writer and very humorous. He was diagnosed with MS 17 years ago and recently found out that it was Lyme disease all along!
You might contact him with your story. He’s highly intelligent has been through every doctor imaginable!
There are so many different neurological, autoimmune, and muscle diseases, that a correct diagnosis is imperative to obtain the right treatment as soon as possible.
Sending you and your son strength, comfort and love as you navigate these uncertain days. ❤️
Sunnyds I feel so useless at times- somehow I feel there is a missing piece to this. I will look into Dave Bexfield. There is alot of information out there hard to see which one is a good standard to follow. Thank you for being supportive- I do really appreciate this immensely. I do not express my stress at home. I will continue to seek information from folks and educate us on how to manage, navigate as this is a long term forever committment. Autoimmune seems to have some sort of spike. Be well, and stay in touch, Worried Mum
It definitely helps to have family members who know what you’re dealing with. Focusing on quality of life is what I do. The where and why I don’t concern myself with.,Thanks
It looks like you're going through every step of how challenging an MS diagnosis can be. I would recommend:
- work with a neuro and MS specialist you trust. It's a long journey so you want and need the right people on your side.
- there's not one test to diagnose ms. it's a combination of test and more and elimination of other potential disease
- you did nothing wrong. ms is not genetic.
- get a vitamin D boost asap. For whatever reason, ms people are often diagnosed with low vitamin D but they have not been able to link the two.
- be careful with what you read online. There is a lot of information that's out of date on the internet. The ability to control the disease and live a normal life has been so much better with the new DMTs. I'm proof of this (6+ years, no lesion since diagnosis and treatment).
- insurance are generally ok. Treatment is expensive but even if they push back, neuro are always good about justifying the treatment.
- ask this forum all the questions you have. ms (if it's ms) is different for everybody but on this forum you'll most likely find someone with a similar path
anaishunter I love your name. That is what I am working on the elimination process. Auto immune just seems to be harder to diagnose. The gap from me is that he was not able to truly tell me about front ventrical flow because it could be a vein not a new lesion. But to be cautious he decided to diagnose with him with MS. He is taking vitamin D3 - and I am also low that is why I started to think this all stemming from my DNA but ofcourse it is all based on a reactive emotional knee jerking effect trying to find the " why this is happening" In the back of my head this prognosis is better than my child having cancer. Honestly- this is just me pouring my thoughts not as a matter of fact but just sharing. Thank you for your time and energy. Stay well, Worried Mum
Oh, the joys of mothers' guilt. 🙄 That knee jerk never really goes away. I routinely relive the day when my daughter was diagnosed with a different autoimmune disease 20+ years ago. I still have moments when I wonder if it's all my fault, even though I know better. It's just what we do.
I never know what little tidbit I may glean from replies. This time it was Vitamin D boost. Used to get them and somewhere along the way I seemed to have just stopped. New PCP next month and I will request it. Thank you!
Hi…I’m sure it’s a stressful and confusing time for you and your son. It’s a lot to take in. MS is a weird disease and we all have different experiences with it. That makes sense when you consider all that is handled by the Central Nervous system.
Frances_B gave you some great resources. I just wanted to add some specific ones. The current criteria for diagnosing M.S. is called the McDonald criteria. If your son didn't meet this gold standard, the doctor shouldn’t have made the diagnosis. It’s irresponsible because, (not to scare you), there are mimics that can be harmed by MS drugs. NMOSD is one example. Here is a link to the criteria: nationalmssociety.org/For-P....
Here is a different link to a list of other conditions that can mimic MS. nationalmssociety.org/Sympt.... MS has a high rate of misdiagnosis.
Also, check out the YouTube videos put together by Dr. Aaron Boster. He is an MS specialist with his own clinic in Ohio and explains things very clearly. In particular his video for the newly diagnosed would be good for your son: youtube.com/shorts/rfXxPpBp....
One of the more frustrating things you’ll discover is even the most well known respected MS neurologists and researchers disagree on some basic things regarding MS and MS patients.
Hi! In about 2005-2006 I felt like I was walking in wet cement at the hospital where I worked as an RN. My background is in the cardiac area, not neuro. I started my workup with my Internal Med MD. I went to two different Infectious Disease doctors for initial evaluation too. I also worked with one neurologist at the Shapiro Center for MS here in Minneapolis. Another physician took over the clinic when the original physician retired. I have continued with this new specialist. I did also see another neurologist who only read the report of my initial MRI (brain, cervical and thoracic areas included). On my current MRI my neurologist can look at the MRI's and say where problems are from it and point them out to me, whereas the comparative neuro MD I went to see also explained my MRI from only the written report by a radiologist. She did not have the ability to look at the images and see where changes were, etc. She said I needed to start injections immediately. I did not do as she recommended with the self injections and continued to see the new MD at the Shapiro Center I had started with. I was diagnosed with Rheumatoid Arthritis very close to the time I was diagnosed with my RRMS, but my neurologist continued to document that I had CIS (Clinic Isolated Syndrome), so as to not officially put MS as the exact diagnosis until all tests were done and the truth was evident. CSI is that gray area where pieces of the puzzle need to create the perfect picture of MS. My symptoms are random, like when my legs go out from underneath me and I collapse in a puddle on the floor. A new symptom that happened a few times one day. I found that I spend those days close to my bed, to not rock the boat.I received IV Cortisone for awhile from an Immunologist I saw in the beginning and then another IV med by my Rheumatologist and that was surmised would be beneficial for both of my diseases. None of these meds
sofar has helped me. In 2018, I was not feeling like the med Rituxan was helping me either for my RA or MS. That was the last IV med treatment I had. My neurologist said he'd he'd like to start me on Ocrevus, but I would need to stop both of the meds I take orally for my Rheumatoid arthritis. My rheumatologist feels that he doesn't want to risk my response I am getting from those oral meds at present.
It was brought up before to find all the videos that Dr Aaron Boster has done. He is SO supportive to his patients and others who live in different states. I just wish I lived in Ohio, where I could see him face to face in his clinic!! He adds humor to his presentations as well. Again always remember, what happens in one patient's course with MS may not be repeated in another one's journey. My two greatest symptoms are overwhelming fatigue and pain. Again those are in my journey.
Hope you can learn things together with your son. Be blessed with whatever life brings his way. Attitude is part of living well. Also, don't allow others to hassle you regarding the path your son ends up following. Because of info you find and share with each other, you are the best ones to choose the path to head down.
Additionally I did have an MRI initially and did have the spinal tap as well. This was my 2nd LP and not the most comfortable by any means. So...I did see lots of doctors and doubled up on a couple of doctors in there specialty areas. I felt better having the extra doctor visits, as it helped me know which doctor I should really trust. Your son should be seeing a doctor who makes him understand what the outcomes could be and what to watch for and someone he feels comfortable asking questions of.Even as a nurse at 21 y.o. I don't think I would know what I should be asking a doctor about. I would feel like I should know this shouldn't I. I mean I just got my BA in Nursing at a 4 year college. Our perception of our lives (at 21) is so different than anyone else that has lived more years (50+years) than the invincible years of later teens or early 20's. I don't blame you as a mom, wanting to hear what the doctor does have to say about your son's diagnosis. After he has lived a few months to a year or two, then let him know he is on his own and that you would appreciate having updates from him about his symptoms and what the doctor has recently said/or told him. In fact it is good to have a set of extra ears at MD appts.
In 2018 I developed my third major disease process which is very rare called
Cyclic Vomiting Syndrome. I won't get into the particulars about that disease, but
I took a nurse friend with me to my appt, in case I missed anything the gastroenterologist may have said to me while I may have focused on a question I was thinking about. The appt was with a specialist 500 miles away. I was impressed with the physician for sure. I did talk about my initial visit on our drive back to our home state. I researched articles to find my own diagnosis, as I wasn't getting any help from my primary doctors. I copied 40-50 articles and studys to see if I was really seeing that I was on the right track. So as rare as the disease was I made my own diagnosis. It does pay off to be your own, or your son's advocate!! Just wanted to add that to the things I wrote last night to you! Good luck!!
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One old lesion and then another one showed up but he is not sure if it is a lesion but could be a vein. 
at my wits end and so is my mom
‘Cause you asked for it
Support from Family and Friends
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Honor your friends and family
